Dorothy was one of the first members to sign up for Pack Health’s grant-funded health coaching program for MS. 3 months in, she’s agreed to share her story:
Let’s start at the beginning. Can you tell me a bit about how you began your journey with Pack Health?
I was actually having a really bad flare up when I started. All the normal things one does in a day were hard for me, like walking, eating, concentrating, to put it in perspective. I was trying to do everything on my own. Sometimes it’s tough to grasp that I can’t do the things I used to do on my own and that I need to ask for help at times.
Well, around that time I joined the National MS Society of Alabama, and they referred me to Pack Health. Almost immediately I received a little blue box in the mail with all the necessary materials to get started with my journey. My Pack contained the self-care guidebook, the stretch band, and a few other things to get me going. Then started my phone calls with Katie, my personal health guru!
Sometimes the journey to better health with MS can be challenging. What keeps you going when the going gets rough?
Katie suggested jotting down notes in the midst of my flare, so to keep track of what I’ll experience in future flares and how to handle them. I hadn’t ever journaled for myself – I’d done it for others as a CNA, a caregiver, and pharm tech, but not ever to help myself out. I found that it definitely helps!
Keeping track of things is truly helpful because you can go back and see how far you’ve come. I began testing myself against the book, I started to do better because I was holding myself accountable!
Accountability is everything! What else did you work on with Katie?
Well, I really relied on the little book that told me all about nutrition and other beneficial things, but there was a lot there, I had a long road. Katie encouraged me to set smaller goals, like walking down the post box down the road, because I live in a rural area, I wasn’t even able to do that! In fact, I still relied on my wheelchair in large, public places. But I set small steps to help me get to the point where I could go on little strolls and not use my wheelchair! I’m working on walking a lot lately!
Having those weekly phone calls, and having that friendly, encouraging voice, it made a real difference. Now I’m in remission so I’m really trying to enjoy myself and walk around when I can.
That’s awesome! Any specific tiny steps you want to share that worked for you?
One thing I cannot emphasize enough: I could not exercise, even for 2 minutes, when I started. The pain level was just too unbearable. I was on pain medication before, as well as arthritis and migraine medicine. But by setting smaller goals, like learning to stretch my body by doing specific stretches for your legs, I was able to gain back some strength. I learned real quickly that when you don’t use them, you lose them and then they hurt! Your legs, I mean. But since Ive started regularly stretching them and taking better care of them, they let me move a bit more!
Staying hydrated, making sure I’m getting enough water, is another tiny step Ive worked on. I went through a difficult time recently, so I wasn’t able to eat very well. I was put on liquid ensure and boost to try and help the problem. With MS you don’t absorb as much calcium as you need, because of a vitamin D deficiency. Ive had tooth loss as a result of that, so chewing was an issue. I actually had my esophagus stretched a while ago to help me with swallowing, but Ive had to keep working on that. Digestion and elimination are often a problem with MS. And you know when you have to get up in the middle of the night to use the restroom, there’s a risk of falling.
Ive learned from Pack Health that I need to drink the water anyway, if you’re going to get up in the middle of the night anyway, you might have well been successful. That’s really motivated me to exercise. I haven’t fallen in a while, and I think that’s because of the strengthening exercises I mentioned earlier.
Finally, I have some things I do for myself like knitting for fine motor skills – that was something Katie encouraged me to do.
I love crocheting, one-handed as Ive had a few issues with one of my hands. I make lap blankets, hats, baby kits I have one boxed up right now for this little boy I met over in evergreen he was out with one blanket with his grandmother, and I wanted to send him some more right away! Around ten years ago, I used this skill for WW, Operation Homefront, Soldiers Angels, and now for others in wheelchairs and strollers. I need to feel every day that I am creative and productive – If I feel every day that I have accomplished one thing, that’s all I need.
What a beautiful hobby. You mentioned trouble with eating – what kinds of healthy foods do you enjoy, or seemed to help you feel better along the way?
I love fruit, and I actually have a thing of applesauce in front of me right now. It’s a great snack when I run out of fresh fruit. Chocolate is my downfall, but with bad teeth and everything else going on, I just don’t overdo it. I also love fresh vegetables.
Being in a rural area, I can only go grocery shopping about once a month, which is limiting, and in this household, there’s a lot more fried food and mac and cheese than fresh fruits and veggies. I just can’t eat fried food every day. I love iceberg lettuce – we call it crunchy water lettuce at my house, and I love it! When I was in California, I used to get a lot of products in the mail and I had a caregiver who would help me get everything unpacked and taken care of. That was nice.
Do you have anything else you’d like to add about your experience with Katie?
Yeah, one thing I have noticed with Katie is she’s very understanding, and your program is very understanding. Part of my problem last year was people who didn’t believe me because the illness is invisible. I’d be walking into a store with my son and I’d fall and people would say she’s faking but of course, I don’t want to fall, it hurts to fall. And a fall can really cost you! I’ve had falls that cost me a few weeks of just sitting around and healing bruises…it’s costly.
Katie got that, and she was never judgemental. There are days where I have to tell Katie the truth about not exercising and she replies with, okay, you didn’t exercise, that’s okay. Just talking about it with her help. Ultimately, I got up to 20 minutes of exercise per day, because that’s what you can do when somebody really understands! I can tell her how I’m feeling, whether good or bad, and she gets it. I want to exercise I enjoy it. I get bored! And that’s where knitting, reading, and stretching come in great handy. She really encouraged me to do the things I could and the things I enjoyed. I love how she didn’t just tell me what to do, she gave me a starting place and helped talk through it with me, and was with me every step of the way! And boy, if you follow it, if you really want to reach your goals, you do!
Katie and I talked about bigger goals too, and getting my own place to live was at the top of my list! I’m getting a new apartment today so I’m really excited: a friend is picking me up and driving me there to sign the lease. There are also some exciting facilities there, like a nutrition center that will cook meals for the residents. I won’t be alone either, and there’s a panic button, so if I ever fall, management will come to help me out, all of which are so comforting! You know, I didn’t have that before. I was in an apartment before with my son which was good, but I really need to have a place that I am renting that is my own. It’s an amazing sense of accomplishment for me.
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